Thursday, August 2, 2012

Raising the White Flag

I love writing about Ben, and about our experiences with him. I love the funny things he says and does, like when he told me that he had two nightmares that were the same, except "the graphics were different" in the second version. I love that he always asks, "How much did that cost?" when someone shows him something new. I love his fascination for the mechanics of things, and his unabashed conversations, such as the one he had with my sister a year or so ago when shortly after I had a hysterectomy, he spontaneously asked her, "So Auntie Jen, have you also had your uterus removed?"

And yet, no matter how much I love him, there are times (today is one) when I want to hoist a white flag over my head, drag myself up and over the hilly battlefield upon which the ceaseless scuffles of Autism are fought every day, and collapse at the feet of whoever might actually have the power to accept my unconditional surrender and plea for mercy.

There are times (today is one) where I just don't think I can do this anymore. Lately I've been envying parents who never wake up in the morning wondering how many times their child will melt into uncontrollable fits of screaming, kicking, punching, and spitting. They never have to decide when might be the appropriate time to sit down with the cub scout troop and explain that their fellow Wolf isn't just a weird, impatient, socially awkward person but that he has a disability.  There are parents who don't think twice about loading the kids into the car for an outing to a park, store, or restaurant. 

There are times (today is one) where I wonder if I am really just not doing this parenting thing right at all.  Those same parents who don't think twice about taking their kids to church or swimming lessons are also generally respected as the final authority in the home. Sure, other kids backtalk and argue; of course other kids fight with each other and even with their parents.  But most of those kids don't leave bruises and bite marks.  I've tried every trick in the book: consequences, punishments, rewards, sticker charts, money in the jar, and outright begging for better behavior.  Nothing works...nothing.  When Ben gets upset, nothing matters.  He just explodes.  And I can either put him in his room and hope he doesn't punch too many holes in walls or kick out the window, or I can try to physically hold onto him and brace myself for the fury.

Those meltdowns are unbearable, largely because they are completely void of all reason and logic.  I can't talk Ben off the ledge, so to speak, while he's in the first phases of the meltdown.  All I can do is wait until finally, in spite of the ongoing punches and kicks, the bites and screams and spit, I see the look in Ben's eyes change from fury to terror.  There always comes a point where he realizes that he is out of control but just can't stop.  And when that moment comes (and sometimes it takes hours to get there), I can finally scoop him into my arms and start rocking him and whispering while the punches get softer and softer and finally subside altogether and the Ben I adore comes back to me.

But he's nine years old now.  And this has been the worst summer of meltdowns he's ever had.  He's bigger and stronger than ever, and there are times (today is one) when I wonder what the future holds for this child.  Will he ever gain more appropriate coping skills?  Will he ever have the ability to move away to college or to a job?  Will he be able to continue living in the house if he doesn't learn to somehow mitigate those outbursts so that they aren't scary and harmful to people around him? 

I'm driving myself crazy with the questions, and with the lack of answers.

And today, bruised and exhausted, I surrender.


  1. Oh Heather. I'm so sorry. I understand how you are feeling. My son, Brendon, is 21 now and we have definately had our highs and lows. I know it's never good to medicate when you don't have to, but we have too. We were having some really scary times. Brendon has taken some mood stabilizers for about six years now and they have made life a lot easier. He has begun to manage his mood changes now so I'm thinking about weaning him off or at least decreasing the prescription so he doesn't have to take so much. The other things that have really helped is keeping him busy and out of the house. We get services via the regional center for community integration and behavioral respet. These have been very helpful. We figured that a lot of the anger started when he was bored so we keep him as busy as possible. Sorry I didn't mean to write you a book. I just "feel your pain" and wanted you to know what we has worked for us.

  2. Cari, thank you so much! I would love it if you would message or email me ( and tell me more about the meds that work for Brendon. A few years ago a psychiatrist started working with Ben to find a combination of mood stabilizers, etc. that might work, but it was the first week of school and Ben literally went crazy. I had no choice but to pull him off those meds and put him back on the ADD meds that help a bit from time to time, but certainly are not the long-term solution we desperately need. I am anxious to get Ben on the right stuff, but just don't know where to start. I have seen what you saw, too, that Ben's outbursts tend to revolve around boredom. I should probably have gotten him more involved in camps or outside activities this summer...except that he hates to leave the house and so I always seem to have to weigh the battle of getting him there against the benefits...I bet you know exactly what I mean! Thanks for your supportive comments and for sharing your experience with me!

    1. Yes I know exactly what you mean. I'll email or message you soon. Feel free to do the same @

  3. You are such a great Mom Heather. I can only imagine how hard life can be. As I read this post, I thought a lot about Hailey. She doesn't hurt anyone but she STILL has outburst which are similar to Bens (with out the scratching and biting and punching). She carries on in her room for upto an hr. after her screaming and crying is a dull roar, then I can go in and start doing the things like rubbing her bare back, and singing and massaging her. My prayers are with you and Ben. I know it seems scary to look at the future. I know you will be actively searching for something to help Ben cope with life. Hold Tight, Knuckles white!!! xoxo

  4. Hi Heather,

    I'm Marta. I graduated from high school with Chris. Chris's dad was the principle of my elementary school and my sixth grade teacher. Every once in a while I check in with your blog because I am in training to be a speech pathologist. And so your perspective is important to me as a professional, but also as another human on this earth.

    I think you're doing an amazing job as a mom. I don't know what kinds of interventions you've tried, but hang in there! Who's your SLP? If you're not getting real substantive therapy ideas for Ben, find someone else. You need and deserve support!

    God bless and good luck.

    All the best,